“I want to ride my bicycle”
I push and pull on my pedals quickly, but still rarely push past 81rpm. Slow. I shake my head slightly, avoiding wasting breath on a sigh. My goal is >90rpm. But that’s okay. Steven said it will come. Don’t focus on cadence just yet. I’m still learning to ride my upright trike. My speed on my upright trike is pitiful, and my speed on my recumbent is improving. But, you know that song by Queen? I want to ride my bicycle.
I turn my thoughts to other things and let my mind wander, trying not to notice the occasional, painful slap of my right knee against the recumbent’s stem.
This weekend will start off with Batman vs. Superman at the local Alamo Drafthouse. The rest of the weekend will be full of packing and more packing. Packing up years of belongings, sorting through memories (I haven’t yet decided if I’m looking forward to that), placing the last four years neatly into boxes to be driven across Houston to store in another apartment for the next however many years.
Next week will be the annual National Ataxia Foundation conference. Mimzy will be with me. I’ll finally spend time with other people who have ataxia, who have an idea of what it means to wake up every day and deal. I’ll go to Epcot at Disney World for a day. I’ll spend three days learning from specialists. I’ll meet other people who share one or more of my symptoms. They’ll understand, and then I won’t be alone anymore.
I’ll come back to Houston and help Adam finish packing up our apartment. Less than a week after I get back we will finish taping the boxes and will start our lives in a different apartment, together. Having moved so many times while growing up… it means something new to me now that I’ve spent four years in one location. Growing up we would move sometimes multiple times a year.
After the move comes the waiting.
We will simply wait. I’ll wait. Adam will wait. Our families will wait. June will leisurely roll around and I’ll finally have the consult with Dr. Scheiss. I’ll struggle between begging her to recommend me for the surgery and obeying rationale by listening to her professional recommendations. I really want that surgery. I’ve spent hours watching videos of the surgery, listening to lectures about the surgery, listening to lectures about alternatives to the surgery, weighing my options, writing down questions, learning all that I can about DBS. There’s a very real possibility that someone is going to shove something into the center of my brain, and damnit I’m going to learn everything I can about it.
My cell phone chirps. My hour is up and it’s time to begin cool down. I look at the numbers. 21.56mph. Better, but I can do better than that. I slow my cadence and pedal on for another few miles, my heart rate dropping under 100 quickly. It hadn’t gone above 137 during the entire session. Thanks bradycardia.
I reluctantly finish. I want to go further, but I can feel a bruise forming on the inside of my knee. Tomorrow will be slower. But I’ll be able to pedal and I’ll be able to walk, and that’s all I need.